TED Residency
Beth Malone: How my dad's dementia changed my idea of death (and life)
贝丝 · 马龙: 我父亲的痴呆症如何改变了我对死亡（和生命）的看法
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带着温情与优雅，贝丝 · 马龙讲述了她的父亲与额颞叶痴呆症顽强抗争、这件事如何改变了她对死亡（及生命）的看法的个人故事。一场非常感人的关于女儿的爱——关于放手和寻找内心安宁的演讲。
Beth Malone - Social entrepreneur, artist
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio
Double-click the English transcript below to play the video.
00:12
I've been doing some thinking.
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我最近一直在想。
00:16
I'm going to kill my dad.
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我要杀了我父亲。
00:19
I called my sister.
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我给姐姐打电话说，
00:20
"Listen,
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“听着，
00:21
I've been doing some thinking.
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我最近一直在想，
00:24
I'm going to kill Dad.
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我要杀了父亲。
00:27
I'm going to take him to Oregon,
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我会把他带到俄勒冈州，
00:30
find some heroin,
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弄一些海洛因
00:32
and give it to him."
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让父亲吸食。”
00:34
My dad has frontotemporal lobe dementia,
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我父亲患有额颞叶痴呆症
00:36
or FTD.
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或简称为FTD。
00:38
It's a confusing disease
that hits people in their 50s or 60s.
that hits people in their 50s or 60s.
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它是一种捉摸不定的病症，
往往在人们5、60岁时找上门来。
往往在人们5、60岁时找上门来。
00:41
It can completely change
someone's personality,
someone's personality,
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它可以彻底改变人的性格，
00:44
making them paranoid and even violent.
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让病人变得偏执甚至暴力。
00:47
My dad's been sick for a decade,
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我父亲患这种病已经10年了，
00:49
but three years ago he got really sick,
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但是3年前他的病情恶化严重，
00:51
and we had to move him out of his house --
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我们不得不把他移出屋子，
00:54
the house that I grew up in,
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——那是我从小长大的地方，
00:56
the house that he built
with his own hands.
with his own hands.
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那是我父亲亲手建造的地方。
00:59
My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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我那身材魁梧、长相酷，
唱歌爱用假音的父亲
唱歌爱用假音的父亲
01:04
had to move into a facility
for round-the-clock care
for round-the-clock care
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不得不搬进提供全天候护理的疗养院
01:06
when he was just 65.
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那时他才65岁。
01:10
At first my mom and sisters
and I made the mistake
and I made the mistake
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刚开始，我和我母亲、
姐妹都犯了个错误，
姐妹都犯了个错误，
01:13
of putting him in a regular nursing home.
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我们把他送到一个常规的疗养院。
01:16
It was really pretty;
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那个地方真的很漂亮，
01:17
it had plush carpet
and afternoon art classes
and afternoon art classes
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那里有长毛绒地毯，
下午还有艺术课，
下午还有艺术课，
01:20
and a dog named Diane.
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还有一只叫戴安的狗。
01:23
But then I got a phone call.
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但马上我就接到了他们打来的电话
01:26
"Ms. Malone, we've arrested your father."
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“Malone女士，
我们已经逮捕了你的父亲。”
我们已经逮捕了你的父亲。”
01:30
"What?"
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“什么？”
01:32
"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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"是这样的，他手持刀具，
威胁这里的每一个人
威胁这里的每一个人
01:36
And then he yanked
the curtains off the wall,
the curtains off the wall,
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然后他把窗帘从墙上猛地拉下来。
01:39
and then he tried
to throw plants out the window.
to throw plants out the window.
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他还试图将植物从窗口扔出去，
01:42
And then, well, he pulled all
the old ladies out of their wheelchairs."
the old ladies out of their wheelchairs."
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最后，哎，他将所有
坐轮椅的老太太从椅子上赶下来。”
坐轮椅的老太太从椅子上赶下来。”
01:49
"All the old ladies?"
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“所有的老太太？”
01:50
(Laughter)
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（笑声）
01:51
"What a cowboy."
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“多么顽皮的老牛仔。”
01:53
(Laughter)
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（笑声）
01:54
After he got kicked out of there,
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他被那里赶出来之后，
01:56
we bounced him between
a bunch of state-run facilities
a bunch of state-run facilities
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我们又换了几家国营的疗养院，
01:59
before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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最后才找到一家
专门针对痴呆症患者的疗养中心。
专门针对痴呆症患者的疗养中心。
02:03
At first, he kind of liked it,
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刚开始，他有些喜欢那里，
02:05
but over time his health declined,
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但过了段时间，他的症状变差，
02:07
and one day I walked in
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有一天我走进去
02:08
and found him sitting hunched over
on the ground wearing a onesie --
on the ground wearing a onesie --
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发现他弯腰驼背地坐在地上,
穿着一件连体衣——
穿着一件连体衣——
02:12
those kinds of outfits
that zip in the back.
that zip in the back.
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就是那种背后有拉链的衣服。
02:17
I watched him for about an hour
as he yanked at it,
as he yanked at it,
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我在那里看了有一个小时，
他不停地拉，想要把这件衣服脱掉。
02:21
trying to find a way out of this thing.
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02:24
And it's supposed to be practical,
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它本来应该是件实用的服装，
02:26
but to me it looked like a straightjacket.
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但在我看来它就像一件约束犯人的
束衣。
束衣。
02:29
And so I ran out.
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我跑了出去。
02:32
I left him there.
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将他丢在那里。
02:35
I sat in my truck -- his old truck --
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我坐在卡车里——
他的旧卡车，
他的旧卡车，
02:37
hunched over,
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蜷缩着身子，
02:39
this really deep guttural cry
coming out of the pit of my belly.
coming out of the pit of my belly.
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痛哭一场。
02:43
I just couldn't believe that my father,
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我完全不敢置信我的父亲，
02:47
the Adonis of my youth,
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我青春期的“阿多尼斯”，
02:50
my really dear friend,
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我亲密的朋友，
02:53
would think that this kind of life
was worth living anymore.
was worth living anymore.
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会认为这种人生值得一活。
02:58
We're programmed
to prioritize productivity.
to prioritize productivity.
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我们天生就追求成就，
03:02
So when a person --
an Adonis in this case --
an Adonis in this case --
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因此当一个人——
在这里即“阿多尼斯”，
在这里即“阿多尼斯”，
不再像我们期待的那样，
03:06
is no longer productive
in the way we expect him to be,
in the way we expect him to be,
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03:09
the way that he expects himself to be,
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不像他自身对自己期待的
那样能够有所成就的时候，
那样能够有所成就的时候，
03:12
what value does that life have left?
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这样的人生还有什么价值呢？
03:15
That day in the truck,
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那天在卡车上
03:17
all I could imagine
was that my dad was being tortured
was that my dad was being tortured
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我能想象的是父亲正遭受折磨，
03:21
and his body was
the vessel of that torture.
the vessel of that torture.
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他的躯体是这种折磨的藏身所。
03:26
I've got to get him out of that body.
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我必须将他从那具躯体中拯救出来。
03:28
I've got to get him out of that body;
I'm going to kill Dad.
I'm going to kill Dad.
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我必须将他从那具躯体中拯救出来，
那么，我必定要杀了父亲。
那么，我必定要杀了父亲。
03:32
I call my sister.
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我给姐姐打电话
03:35
"Beth," she said.
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她回复道，“Beth，“
03:40
"You don't want
to live the rest of your life
to live the rest of your life
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”你不想余生生活在
03:42
knowing that you killed your father.
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你杀了父亲的阴影当中。
03:44
And you'd be arrested I think,
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而且我想你会遭到逮捕的
03:46
because he can't condone it.
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因为他没法去宽恕你。
03:48
And you don't even know
how to buy heroin."
how to buy heroin."
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你甚至不知道如何买海洛因。”
03:50
(Laughter)
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（笑声）
03:51
It's true, I don't.
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是的，我不知道怎么买。
03:53
(Laughter)
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（笑声）
03:56
The truth is we talk
about his death a lot.
about his death a lot.
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事实上是，
关于父亲的死亡我们谈论了很多。
关于父亲的死亡我们谈论了很多。
03:58
When will it happen? What will it be like?
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死亡将何时来临？将会是怎样的？
04:00
But I wish that we would have talked
about death when we were all healthy.
about death when we were all healthy.
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但我希望在我们都健康的时候，
就讨论死亡。
就讨论死亡。
04:04
What does my best death look like?
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我最好的死亡方式是怎样的？
04:07
What does your best death look like?
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你最好的死亡方式是怎样的？
04:10
But my family didn't know to do that.
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但是我的家人未谈论过这些。
04:13
And my sister was right.
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我姐姐是对的。
04:15
I shouldn't murder Dad with heroin,
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我不应该用海洛因谋杀父亲，
04:18
but I've got to get him out of that body.
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但我必须将他从那具躯体中
拯救出来。
拯救出来。
04:22
So I went to a psychic.
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因此我去找过通灵师，
04:24
And then a priest,
and then a support group,
and then a support group,
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接着找了牧师，还有一个互助团体
04:26
and they all said the same thing:
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他们都告诉我同样的事：
04:28
sometimes people hang on
when they're worried about loved ones.
when they're worried about loved ones.
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当人们在担忧至亲的时候，
会不忍就此离去。
会不忍就此离去。
04:31
Just tell them you're safe,
and it's OK to go when you're ready.
and it's OK to go when you're ready.
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只要告诉他们你是安全的，
当你安全时他可以安心离去。
当你安全时他可以安心离去。
04:35
So I went to see Dad.
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因此我去看父亲，
04:37
I found him hunched over
on the ground in the onesie.
on the ground in the onesie.
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我发现他穿着背扣衣，
弯腰驼背坐在地上。
弯腰驼背坐在地上。
04:40
He was staring past me
and just kind of looking at the ground.
and just kind of looking at the ground.
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他眼神跨过我，
就像在看着地板。
就像在看着地板。
04:43
I gave him a ginger ale
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我给了他一瓶姜汁饮料，
04:44
and just started talking
about nothing in particular,
about nothing in particular,
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开始漫无目的地交谈
04:47
but as I was talking,
he sneezed from the ginger ale.
he sneezed from the ginger ale.
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但当我在说话的时候，
他因为喝饮料而直打喷嚏。
他因为喝饮料而直打喷嚏。
04:52
And the sneeze --
it jerked his body upright,
it jerked his body upright,
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打喷嚏的动作就
顺势让他的身体直立起来，
顺势让他的身体直立起来，
04:55
sparking him back to life a little bit.
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闪现出一丝生命的活力。
04:57
And he just kept drinking and sneezing
and sparking, over and over and over again
and sparking, over and over and over again
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他一直不停地喝饮料打喷嚏，
循环往复，
循环往复，
05:02
until it stopped.
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直到最后停下来。
05:05
And I heard,
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这时候我听到，
05:07
"Heheheheheh,
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”呵呵呵呵
05:09
heheheheheh ...
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呵呵呵呵……
05:12
this is so fabulous.
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太赞了。
05:15
This is so fabulous."
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太赞了。”
05:18
His eyes were open
and he was looking at me,
and he was looking at me,
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他的眼睛是睁开的，
他正看着我。
他正看着我。
05:21
and I said, "Hi, Dad!"
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我说：“父亲，你好！”
05:23
and he said, "Hiya, Beth."
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他回复道：“贝丝，你好啊。”
05:27
And I opened my mouth to tell him, right?
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然后我就可以开口告诉他，
对吧？
对吧？
05:29
"Dad, if you want to die, you can die.
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“父亲，如果你想离去，
你可以。”
你可以。”
05:32
We're all OK."
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我们都很好
05:33
But as I opened my mouth to tell him,
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但是的当我真正张开嘴时，
05:35
all I could say was, "Dad!
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我能说出口的只有，
05:40
I miss you."
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“父亲，我想你。”
05:42
And then he said, "Well, I miss you, too."
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接着他说：”我也想你。“
05:44
And then I just fell over
because I'm just a mess.
because I'm just a mess.
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然后我就跌坐下来，
因为我一团糟。
因为我一团糟。
05:47
So I fell over and I sat there with him
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我跟他坐在一起，
05:52
because for the first time in a long time
he seemed kind of OK.
he seemed kind of OK.
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因为很长时间来我首次发现
他看起来还不错，
他看起来还不错，
05:56
And I memorized his hands,
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我拉着他的手
05:59
feeling so grateful that his spirit
was still attached to his body.
was still attached to his body.
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他的灵魂还依附于身体上，
对此我心存感激。
对此我心存感激。
06:05
And in that moment I realized
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在那一瞬间，我意识到，
06:08
I'm not responsible for this person.
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我无法对这个人负责，
06:11
I'm not his doctor,
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我不是他的医生，
06:13
I'm not his mother,
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我也不是他的母亲，
06:15
I'm certainly not his God,
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我肯定不是他的上帝，
06:17
and maybe the best way to help him and me
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也许帮助他和我的最好方式是，
06:21
is to resume our roles
as father and daughter.
as father and daughter.
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回归我们父女的角色。
06:25
And so we just sat there,
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因此我们就这么坐着，
06:27
calm and quiet like we've always done.
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像一直以来的那样平静镇定，
06:30
Nobody was productive.
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没有人是浮躁不安的。
06:32
Both of us are still strong.
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我们都还很坚强。
06:37
"OK, Dad. I'm going to go,
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”好了，父亲，我要走了，
06:40
but I'll see you tomorrow."
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但我明天还会来看你。“
06:43
"OK," he said.
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”好的“，他说，
06:46
"Hey,
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"嘿，
06:48
this is a pretty nice hacienda."
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这个地方真不错。“
06:51
Thank you.
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谢谢。
06:53
(Applause)
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（掌声）
ABOUT THE SPEAKER
Beth Malone - Social entrepreneur, artistTED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks.
Why you should listen
Beth Malone is executive director and partner at Dashboard US, an award-winning, experimental creative agency. Dashboard has presented exhibitions and special artist projects in cities around the country including New York, New Orleans, Atlanta, and Detroit. Dashboard has commissioned new, nontraditional works from over 200 artists.
Malone encourages artists to have a sense of humor, to be vulnerable and take creative risks, a practice she employed for herself when processing illness, caretaking and death. In 2014, she and her dad were sitting on a couch in a psychiatric hospital in Atlanta, GA. He looked at her and said, "I’m gonna be lost after this. After this, I’m gonna be gone." In August 2017, her dad passed away from frontotemporal lobe dementia -- just two months after she gave her TED Talk. It was a good death.
Beth Malone | Speaker | TED.com